Happy Holidays/ALS Awareness

I went to a small Quaker college in Greensboro, North Carolina that had fewer people than my high school and could be described as something of a hippie haven. My educational choice of a “lesser-known” college surprised many as I had been a serious student accepted into several Ivy League schools.

I remained firm in my decision, however, quixotic as it appeared to others. This marked perhaps the beginning of my unconventional, but quietly strong-willed approach to life: Don’t worry too much over other people’s logic; what feels right inside? When that question’s answered, then do it.

I’m more certain than ever of my decision, especially when I (continually) learn about the inspiring deeds of my former college classmates.

Quakers believe in peace, equality, and that of God in everyone, what they call “inner light.” Most of us who went to Guilford College weren’t Quakers ourselves, but it seems to have attracted some of the most caring people anyway, those who naturally manifest these ideals. (Though don’t get me wrong; we were also rowdy, as 18-year olds are meant to be rowdy).

Tim was a lively figure on campus. Often wearing a cow suit or playing loud music with his band in the Underground, he was someone you couldn’t miss. While he was never in my close circle of friends, we were still friendly – as you were with just about everybody (Did I mention the college was located on Friendly Avenue, too?)

In April 2009, Tim was diagnosed at age 29 with ALS, better known as Lou Gherig’s disease. A devastating diagnosis, as ALS is terminal, usually acts quickly in most cases, and robs people of muscle control, movement, and their voices.

But no, Tim still has a voice – a message. And a strong army behind him.

At first, his close friends simply wanted to find a way to take care of him and to raise money for his (increasingly expensive) medical needs.

The effort, however, has blossomed into an entire awareness campaign and something much larger than anyone anticipated. ALS isn’t a well-known disease – Tim and his Often Awesome Army as the support group has come to call themselves – are working to change that. Benefit concerts, auctions, and other awareness-raising events have all taken place in the past year.

Every 2 weeks, a new web video comes out documenting Tim’s story and the work of the Often Awesome Army. While I’m saddened to watch the progression of his disease – Tim is now mainly housebound, depends on machines to breathe, and can only speak through a technological device – I cry at each episode not simply for this painful reality, but also in joyful awe. That is because this is also a story of tremendous love and community.

It’s been amazing to witness what human beings are willing to do for each other without any expectation of reward, to see how many people care – strangers and friends alike – and see the proof once again that we are stronger when we work together and lean on each other for support.

People who don’t even know Tim have helped with the cause; it’s heartwarming and incredible. A special shout-out is necessary to a core group of folks, though, who look after Tim’s daily care needs, which at this point must be massive, exhausting, and hard. They’re still doing it. I recognize many familiar faces in this crowd.

Right now, people talk a lot about the holiday spirit. What exactly does that mean? My family is not particularly religious and we try not to be huge consumers. This means the holiday is simply a chance to be together and exercise what we should all year: generosity, gratitude, love.

Through the videos, I’ve been able to see how people care for Tim, support each other, and manifest community in their actions. I cannot think of a better embodiment of what we should be celebrating right now. This is the holiday spirit, but practiced year-round.

And so, my holiday greetings this year are inspired by Tim and his Often Awesome Army. I hope also, to raise some small bit of awareness.

Some people look at me and are wowed that I’ve lived in two of the world’s most amazing cities. What does it take, they ask, to thrive in these big, bustling metropolises?

I say, I gained confidence to go forth into this big wide world because of what I saw at my small Quaker school. And I see it still: That people are good. People will surprise and amaze you. People will help when called upon.

The trailer alone made me cry. I definitely want to watch more of the series and really understand ALS. Absolutely heart breaking but wonderful to see so many people joining together to create awareness and support Tim.

I know. I have cried many times watching that trailer. The latest episode on the web series, #26, is a “year in review” and a great way to catch up on Tim’s story from diagnosis to where they currently are: http://www.allacesmedia.com/oftenawesome/ Thanks so much for watching.

I didn’t know about ALS until it hit Tim, either. It really needs more attention – and of course it brings up all sorts of issues about the health care system in the US!

Thank you for sharing Tim’s story. As sad as it sounds it is easy to forget the important things in life during this time of the year. All I see are people fighting over parking places at the mall, driving as if in a hurry all the time, and sad faces in the crowds. We all need to slow down and be thankful for what we have. Have a very Merry Christmas and a Happy New Year!

Thank you, Buffy. Yes, this is exactly why I’ve been thinking about Tim, especially at this time of year. We can lose perspective on what a gift life is during a time of year where we’re actually supposed to be celebrating. Have a very happy holiday season.

I’ve known about ALS for years, probably because of one of its most famous suffererers, Stephen Hawking, the English physicist. (Yeah, I have been a supergeek in the past :) ). I don’t know how it is that Hawking has lived with ALS as long as he has when Tim’s prognosis is not good, and neither was that of his mom and grandmother. I had no idea that the progression could be so swift and so devastating. (I just checked Wikipedia and it says Hawking has “neuro-muscular dystrophy that is related to ALS.” Maybe it is a different form of the disease that he has.) Anyway, I did know about the devastation it causes in the physical being of a person who has it, and I am saddened to know that it has happened to Tim, who was so young and vibrant a person (in body) before diagnosis. I appreciate that his spirit is still young and vibrant, though. I’m glad that he and his family and friends have chosen to tell their story via the web in order to draw more attention to what ALS is and what it does.

I love what Tim’s wife, Kaylan said in the video, “It’s really amazing what people can do for one another just out of pure love.”

Hi Karin. Yes, Stephen Hawking does have ALS, but I’ve been wondering, too if it’s a different form of the disease. The majority of people with ALS die within a year of diagnosis. So, so sad. Of course, someone like Hawking has more resources at his disposal and maybe he has access to drugs “ordinary” people don’t. I have no idea – and I could go off on a riff about the sorry state of health care if I’m not careful!

Thank you for sharing this story, both of Tim’s and more of your own. I have started reading some on Tim’s website and hope that he oontiunes to receive the care and support he needs and wants. Happy Christmas.

paris (im)perfect?

Sion Dayson is paris (im)perfect. Writer, dreamer, I moved to France on – no exaggerating – a romantic whim. As you can imagine, a lot can go wrong (and very right!) with such a (non)plan. These are the (im)perfect stories that result.